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At the breaking point and need some answers
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anna_banana_2012 posted:
Hi,
My name is anna and i'm 25 years old. I haven't been diagnosed with epilepsy or anything for that matter yet. I have never had any major medical problems until February of 2011 when out of the blue I had two seizures back to back. I woke up and paramedics were in my face asking me questions I couldn't really answer. I lost a good portion of my long term memory for a month after that. all the tests came back normal so nothing was done then. Since then I have had over 30 seizures my perphial vision is no gone and I lost all color vision( I only see black and white), I have major migranes all the time, and get nauseated a lot. I have seen doctors etc but no one can figure out what is causing this. I was told that I was having grand mal seizures by the way they were described etc. I have no auroa's or even memory of any of my seizures. I lost two jobs due to having this medical problem and I recently walked out of my last attempt to work after having a manager and several employee's standing around me laughing and saying I was faking it when I woke up from a seizure at work. I'm scared that this wont go away I have tried seizure medicines and nothing is working so far. my vision is getting worse all the time and i'm probably going to go blind soon if I don't get some help. its making me depressed because I can't do a lot of the things I used to or want to like driving etc. I lost my health insurance and its hard to find doctors to really listen and help you with no insurance much less afford to pay for it. I'm really at my breaking point now i'm scared to death and I know something is really wrong with me..i just want answers. is anyone else having this? is it normal to loss your vision etc? is it normal for seizures to just happen out of the blue and continue to get worse? I don't understand it.
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dancer86442 responded:
Hello Anna,

Welcome to my Home. I am glad you came to us. You are New to Epilepsy & there is a Lot to Learn. But, education /research/homework Support can help you overcome any fears.

Is it normal? Yes, ma'am, all of it is. My Daughters' came out of the blue when she was 27. We now know genetics & changing hormones other factors, are involved in hers. It is Rare to lose vision, but, we have a member here who has. Use our community Search tool w/ the name Jason. Archives will give you discussions w/ him. I will, also, contact him. So don't go away.

Migraines have been proven to be co-morbid w/ Epilepsy. So, yes, that is more common than most ppl think. So is Discrimination & Very Rude People who are Uneducated & should be treated as such. It's a shame you aren't more 'seasoned' & I know I can't walk a mile in your shoes. But, I have learned over the yrs that I would rather move on w/ my life & hold my chin up, no matter what. You know there is a problem. That's all that matters.

As for help Please visit the Epilepsy Foundation.org & learn where an affiliate is located in your State. Contact them & ask about medical assistance. Another site that can recommend drs in your area & provide you w/ more info is epilepsytalk.com. Links provided in Tips or Resources. There is no need to join these sites to read their info. Only to ask questions, comment, etc.

Medications aren't working: Consider one of the diets for Epilepsy. More info on this site & others' I mentioned. But, keep in mind, there are over 20 or more meds & who knows which one, at which dose, will work. Drs cannot predict that or how you will react to the meds. It is important to Start a Daily Journal. Please read Journal Info posted in Helpful Tips. It is, also, important to remember to take your meds same time every day & not misses doses. To eat Nutritiously.Our Diet helps metabolize our meds better, so they work more effectively have the benefit of decreasing, even eliminating side effects.

I would like you to contact a friend of mine. for further assistance/advice. visit http://nationalseizuredisordersfoundation.org/

Please keep us posted on how you are doing. Know we care. We can answer your questions, listen to you rant or just letting us know you are having a Better Day. Hugs!

Love Candi

BTWL Some of our seizure meds are used for Migraines, also. I believe Topamax is one of them. Use the drug Tab above to learn more & visit our Epilepsy Health Center Link at bottom of the page.
 
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dancer86442 replied to dancer86442's response:
Tip to alleviate Migraine. Place feet & hands in sink w/ warm water & place a bag of frozen peas on the base of you skull. I think a small tub would work, too. If ya don't have a vanity on your sink. The heat on your extremities pulls blood from your head relieving some or all pain. Hugs!
 
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anna_banana_2012 replied to dancer86442's response:
Thank you for all the info you have given me! I knew seizures could come out of the blue but I had no idea that they could be this bad....I'm having several a week now! I also haven't heard of anyone else losing there per phial vision and going completely color blind! It's like my line of vision is slowly shrinking away! I run into things sometimes especially if it's an unfamiliar place etc. I was told seizures could cause headaches but they told me that it wouldn't cause them 24/7. My doctor back home in Louisiana started having concerns that I have a tumor in my brain but I lost my insurance and never could afford to pay the $300 upfront for the neurosurgeon and the 20% down for the MRI! I tried applying for Medicaid but that was a joke.... Here is what my Representive told me " you didn't qualify even though you obviously need it, I can get you qualified if you either get a divorce, get pregnant, see if your brother will let you claim his baby as yours" I was shocked and very upset that for one I was denied when I need the help and for two she had the nerve to say that to me! I can't file for disability yet even though I meet there requirements because I haven't been diagnosed yet! I hope my doctor back home isn't right that it's not a tumor but honestly I would just be relieved to know! Yes there are a lot of seizure medicines I've tried three so far with no luck but hopefully one will work soon. As far as the people I used to work with that had the nerve to laugh at me and not help me they weren't uneducated in fact 2 of them one being my manager had family members that had seizures! The other one just never liked me..not sure why but I don't care! I will definately be looking for Jason's stuff on here! Thank you again!
 
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BlazingTiger responded:
Hi Anna,
Sorry you are going through a double whammy like this. I however do know where your coming from. Candi is a very smart woman. She knows her stuff when it comes to seizures. It was best described by her saying a seizure is like an electrical storm. A high amount of seizures can do multiple things including but not limited to migraines & vision loss in whole or part. My vision loss is from a head trauma. You asked is this normal for what is going on with seizures. With the amount of seizures in such a short time I would say absolutely. I am legally blind with epilepsy. Although it's not the cause of my blindness. I have had several concussions from my seizures walking into door frames & walls. No perifriel vision at all its totally gone. The stigma of others who think we are faking it have no idea what we go through. I get no warning with my seizures. I notice 1 tell tale sign. My mouth gets excessively dry & scratchy. Pretty much like swallowing a bag of cotton followed by sand.

Jason
 
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anna_banana_2012 replied to BlazingTiger's response:
Jason,

Yes she is, I had already started my journal for my seizures and my husband and I are talking about getting me a medical bracelet. I have walked into plenty of doors etc with my vision loss and like you I can't tell when I'm getting a seizure either. I had 7 seizures on Friday and was taken to the er. They switched my seizure medicines again to topamax. I have to start out at a low dose and work my way up. So hopefully that works out.
Anna B
 
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dancer86442 replied to anna_banana_2012's response:
Hi Anna,

Thank You for the compliment. Both you & Jason. But, seriously, I am Still Learning. Epilepsy, is indeed a never-ending Journey of Learning! I don't know everything, but, I have learned a Lot from previous members. As I have learned from You! Each persons experiences can be 'unique' unto them, yet 'similar' to others'. Make Sense?

My daughter is on Topamax, again. This time for weight loss. Lyrica was controlling seizures, but, she gained like crazy. She seems to being doing good, though. I think one of the Major complaints about this med is that it deserved it's knick-name: Dope-amax.

Definitely get a medic alert band & keep a Card in your wallet w/ Necessary Info, including meds. Also, you may want to consider the new SmartWatch. You can learn more about that on the NSDF site I posted in previous comment. Tonya is being sponsored by them this month I believe. which means she can get you a discount, at least. There are other new tech developments that can assist you, too. Seizure mats, for nocturnal seizures. Seizure belts & watches. We've come a long way from baby monitors & spy cams. But, for those who can't afford the new tech stuff, old tech stuff works.

You have tried meds b4, so, you know the routine, rite? No changing use of any personal products, laundry soaps, etc. Give each dose 2-6 weeks, b4 increasing or saying 'forget it'. Each person has their own 'therapeutic range' when it comes to meds. Hopefully, you won't have to increase it to the Max. Keep us posted. Hugs

Love Candi
 
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saxofone1 responded:
Hi Anna,

Welcome to the group. The people who participate in the discussions are wonderful. We share our personal stories in an effort to give each other insight about our ep, medications, and encouragement to live positively. I too feel that Candi is simply a wonderful person who cares about all of us.

My seizures came out of nowhere back in '75 just prior to my 14th birthday. My first EEGS showed nothing of concern but the seizures were real. Early on I had auras but as time passed those auras became shorter and shorter until they were totally gone.

I have been on a variety of meds because my body would no longer respond to a current one.

I don't have any vision problems due to my ep. I do feel your frustrations in not being able to do what you feel you are capable of. I also understand your pain you're experiencing from the ridicule of the non-educated. Dismiss them from your life. It will be beneficial to eliminate the negatives around you ASAP.

I had trouble in school as well as finding work because of my ep and the side-effects from the meds.

I have had headaches since my 1st seizure med. I've learned to live with them cause they are not as bad as the ones you've descriped.

Please don't get the alert bracelets you see in the drug stores. Those only say what your medical condition is. They give no personal info regarding your name, emergency contacts, meds to take/not take,etc. You definitely want the official Medic Alert bracelet, www.medicalert.com

I am mad about what that government worker said to you. It simply doesn't make any sense.

You hang in there. We understand your fears. We are here to help you in whatever way we can.

NIce to hear from you, Jason.

hugs to all,
angie
 
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anna_banana_2012 replied to dancer86442's response:
Candi,

Your very welcome! I agree there is a lot to learn about it and yes while everyone's experience is unique it is still similar to others. I've read that topamax could help with weight loss which Iis fine by me...I'm also on plexus slim and have been doing good in that department but I still have a lot left to loose!!! I read the side effects and what others have said on an Rx app I have and saw that it makes you dopey feeling. I'm going to look into all of that seizure tech stuff. Yes I'm used to all of that when trying new medicines.
Anna B
 
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anna_banana_2012 replied to saxofone1's response:
Angie,

I'm really glad I found this group!!! I've only been given one EEG and that was with my first seizures but it came back normal like yours. I'm told now I need one and a MRI....my husband is getting a better job with excellent benefits so soon all of that won't be a problem!! If it wasn't for him idk what I would do because he has wrote on the tags of all my clothes what color they are so I can dress myself without fear of mismatching lol, he listens to the doctors advice as well as asks questions to be able to help me better!!! I'm getting away from all the negative because I really don't need that, I need to keep calm and positive especially with high blood pressure but sometimes it's hard because I get so frustrated/sad that I can't do a lot of things I used too like drive, go shopping, or really enjoy going to the movies! I hate to hear that you have headaches too, it's miserable I know. Thank you for letting me know that about the medical alert bracelets because I was looking at one at the pharmacy!!! Trust me I know, I couldn't believe she said that to me either! My husband was furious.
Anna B
 
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dancer86442 replied to anna_banana_2012's response:
Anna, I am Glad you found us, too. We may be a Small Family, but, we Try hard to help anyone who needs Info &/or Support! All my tests, over a 30 yrs span came back 'normal' as far as I know. I had a 24-72hr portable EEG done about 5 yrs ago & a New Seizure Syndrome was discovered. Seems I have seizure activity happening while I am asleep. But, guess what? There is no apparent physical activity. I learned this syndrome is present mainly in children. So, since my seizures started as a babe/toddler I would love to know if this was happening back when, too. A question that I will never have an answer, too. Except my Own. Seems that has been the Only Way for me to get answers about my Epilepsy. Either Gut Instinct or Education or both combined.

Sounds like you have a Keeper in that Hubby of yours. It's Good to Hear that. So many PPL don't get Support from Family/spouses. I found my man when I was 37 & we have raised a son & celebrated 25 yrs of marriage. My Son's B'Day was Halloween.

I don't get frustrated about doing things when I want to. Not anymore. I Prefer riding Shotgun. I Feel Safer & I Know others on the road will be safe. From me anyway. The less shopping I do the better. Hubby says I am a compulsive buyer. I may not need it, but, I like it, I buy it!

Keep Calm? Try Yoga, meditation &/or Breathing exercises. Pursed Lip Breathing is recommended for those w/ Epilepsy. Think Positive! Yes! Everyday! If possible. Hugs!

Love Candi
November is Epilepsy Awareness Month Wear Purple/Place a Purple light in/on home/businesses. Encourage others' to show Their support
 
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saxofone1 replied to anna_banana_2012's response:
I'm glad you found us too.

I was on the Internet seaching for info when I found this site. I wish such support sites were around when I had my first. It would have been so helpful to my mom. She definitely needed answers since I'm the only one in the family with ep. But I have made the past 38 yrs bearable for her...lol.

Your husband sounds wonderful. How many people, men or women, would take the time to color code someone else's wardrobe? Give him our thanks for being there for you.

Don't worry about what you're no longer able to do. Focus on your abilities, big or small. You know the story about the little engine. So many others thought he couldn't pull that load. He had determination and heart. "yes I can, yes I can." And he did much to the others' surprise.

You can too.

angie
 
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anna_banana_2012 replied to saxofone1's response:
Thank y'all so much for all the wonderful compliments on my amazing husband!!! I do consider myself lucky to have him!! I think my mom knew what she was doing when she started embarrassing me in front of him by saying my daughter is single are you? Lol!!!

Your right I'm trying to focus on the good and not the bad after all I can't change it now!!! I'm very happy this site exist!!!! I look forward to receiving an email that I have a reply on it!

I have a question and hopefully y'all can help. While my husband and I want nothing more than to be parents one day we weren't trying to get pregnant...but I may be pregnant now!!!! Exciting I know it will be our first!!! We are worried because of the seizures and high blood pressure though. Is it possible to have a healthy pregnancy with both of those things going on? I know timing isn't to good but in a way it is for me because if I am it's exactly 1 year to the day since my mom passed away and that's a miracle to me!!!
Anna B
 
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dancer86442 replied to anna_banana_2012's response:
Anna,

First: Congratulations, if you Are PG.

There are ways to get your blood pressure down. WebMD should have Info for you on that subject. As for the seizures, it is not good to be PG w/ active seizures. So much can go wrong if you have a seizure. But, you can still have a Healthy PG experience. I Did! I wasn't planning on getting PG either. My son was born 1 yr after I was placed on a med that controlled my seizures. My daughter was 17 at the time.

I do know that you Need to start taking Folic Acid. Immediately! But, now it is even More Important for you to see some DRS! Please, insist they talk w/ each other. You are considered High Risk & DRS communicating is Vital!


Have you done a Home PG test, yet?


Love Candi
November is Epilepsy Awareness Month Wear Purple/Place a Purple light in/on home/businesses. Encourage others' to show Their support
 
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saxofone1 replied to anna_banana_2012's response:
Hi Anna,

If you are PG, then I send you, your hubby, and the unborn my best. I wish you the best regardless.

I have no kids unless you count the past yrs I've worked at elementary schools as being a parent. I got to send them home but I did miss them during the summer breaks.

Do follow Candi's suggestions. I think by now you know how much respect/love we have for her. Many of us will probably never meet her but our love for her is sincere.

Let us know how that PG test turns out.

angie


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